More than 400,000 individuals in the United States are treated with maintenance dialysis for end-stage renal disease. Most of these patients receive hemodialysis at a dialysis center with treatments administered by nurses and technicians and minimal involvement by the patient. A small proportion of patients perform dialysis in the home using either peritoneal dialysis (8%), or home hemodialysis (HHD) (<1%). In contrast to in-center hemodialysis which usually consists of thrice weekly treatments 3-4 hours in duration, HHD is typically performed 5-6 times per week or with 6-8 hour nocturnal sessions three times per week. There is accumulating suggestive evidence that, in comparison with conventional in-center hemodialysis, HHD has benefits on blood pressure, mineral metabolism, hospitalization rates, quality of life, and survival. The use of HHD by such a small proportion of patients despite these potential benefits has been attributed to limited access to this modality because of the relatively small number of centers offering HHD, lack of physician experience with the modality, and limited dialysis provider organization infra-structure to support HHD. A less appreciated contributor to the low utilization of HHD is discontinuation of HHD by patients who have initiated treatment with the modality. HHD discontinuation, which has been reported to occur at rates of 20-25% during the first year of treatment, has a substantial deleterious impact given the large upfront costs, personnel time and patient/family commitment required for HHD training and initiation. Little is known about the reasons patients discontinue HHD or effective approaches to reduce HHD discontinuation. The objective of the proposed study is to identify patient and dialysis facility factors associated with HHD discontinuation witha specific focus on potentially modifiable contributors and indicators of risk that could trigger increased support to prevent discontinuation. A unique dataset created by merging data from the United States Renal Data System (USRDS) and a dialysis provider organization with a large HHD program will be used to characterize the rate and timing of HHD discontinuation, identify patient and facility factors associated with HHD discontinuation, and determine the impact of hospitalizations on HHD discontinuation. In addition, semi-structured interviews will be conducted with patients, family members and dialysis facility staff from the University of Pennsylvania HHD Program to explore factors contributing to HHD discontinuation that cannot be measured through secondary data analysis alone. This work is expected to 1) identify targets for interventions to reduce HHD discontinuation, an important but poorly understood barrier to utilization of this dialysis modality, and 2) provide the applicant with experience in biostatistic, clinical epidemiology and primary data collection that, together with the formal coursework in her master's degree program, will prepare her for a research career in nephrology.

Public Health Relevance

Over 400,000 people in the United States are treated with maintenance dialysis for end stage renal disease and although dialysis is lifesaving, patients requiring maintenance dialysis have high mortality rates, frequent hospitalizations, and poor functional status and quality of life. Despite accumulating evidence that hemodialysis performed at home rather than in dialysis facilities has clinical benefits, home hemodialysis is a significanly underused modality in part due to a high rate of discontinuation and transfer to in-center hemodialysis. The proposed project will identify factors associated with discontinuation of home hemodialysis and targets for interventions to increase the utilization and success of this much needed alternative for patients.